Our Parkinson's Place: FoxFeed Blog: MJFF Heads to World Parkinson Congress

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Tuesday, May 28, 2019

FoxFeed Blog: MJFF Heads to World Parkinson Congress

by Krishna Knabe, May 28, 2019

The Michael J. Fox Foundation (MJFF) is headed to Kyoto, Japan, for the 5th World Parkinson Congress (WPC). The Congress brings together people with Parkinson's, care partners, physicians, advocates and researchers to share the latest research and care options. There are many opportunities to connect with MJFF staff, funded investigators and patient advocates throughout WPC, which runs from June 4 through 7. Learn more by listening to the official WPC podcast, When Life Gives You Parkinson's, hosted by MJFF Patient Council member Larry Gifford.

MJFF Booth

Visit us at Booth 117 in the Event Hall throughout WPC and get a memory of your trip at our photo booth. Each day, we will hold an "Ask the Expert" session from 12:00 to 1:00 p.m. featuring a Parkinson's researcher leading a study joined by a person who has participated in research. Check the booth for a complete lineup of experts scheduled each day. And don't miss the award ceremony in the Main Hall on Friday at 9:00 a.m. when MJFF Patient Council Co-Chair Soania Mathur will receive the WPC Award for Distinguished Contribution to the Parkinson Community.

Clinical Research Village

Next to the MJFF booth in the Event Hall, you'll find the Clinical Research Village, where you can learn about the ins and outs of participating in clinical trials. MJFF is cosponsoring this area with Voyager Therapeutics and in-kind support from The Cure Parkinson's Trust. The Clinical Research Village will feature several panels each day, with a mix of trial volunteers, researchers and site coordinators. Our staff has helped plan many of the sessions including "Patient Involvement in Practice" on Wednesday, June 5 at 5:30 p.m. and "Common Concerns and Myths about Research Participation Dispelled" on Thursday, June 6 at 12:00 p.m.

Posters

MJFF staff and funded investigators are featured throughout the WPC Program. Highlights follow:

Wednesday, June 5, 8:00 - 9:00 a.m., Hot Topics Talk 2, P13.08. A Cross-Sectional Natural History of Parkinson's Disease as Reported by >10,000 Patients. Ira Shoulson et al.
Wednesday, June 5, 8:00 - 9:00 a.m., Hot Topics Talk 4, P42.01. The Fox Insight Study: An Empowering Opportunity to Fuel Parkinson's Research and Help Advance Scientific Breakthroughs from the Comfort of Home. Roseanne Dobkin et al.
Wednesday, June 5, 3:30 - 5:00 p.m., Parallel Session Talk 3. LRRK2 as a Therapeutic Target. Brian Fiske.
Wednesday, June 5, All Day, Poster P23.20. NILO-PD: A Phase 2A Study of Nilotinib in Patients with Advanced Parkinson's Disease: Recruitment Initiatives. Tanya Simuni et al.
Wednesday, June 5, All Day, Poster P12.03. Exploring the Experience of Wearing Off in Parkinson's Disease: A Qualitative Research Approach. Sohini Chowhury et al.
Wednesday, June 5, All Day, Poster P12.11. Communication of OFF Periods in Parkinson's Disease: A Survey of Physicians, PwP and Care Partners. Connie Marras et al.
Wednesday, June 5, All Day, Poster P12.12. Experience and Impact of OFF Periods in Parkinson's Disease: A Survey of Physicians, PwP and Care Partners. Connie Marras et al.
Wednesday, June 5, All Day, Poster P23.04. Expedited Access to Therapies: How Measuring and Incorporating Patient Preferences Can Make Clinical Trials More Efficient and More Effective. Anne Donnelly et al.
Wednesday, June 5, All Day, Poster P23.11. A Promotores Model to Increase Parkinson's Disease (PD) Research Awareness and Participation in the Hispanic Community in Phoenix, Arizona. Claudia Martinez et al.
Thursday, June 6, 1:30 - 3:00 p.m., Roundtable Table 6. The Heterogeneity of Parkinson's Disease -- What Does it Mean and Why is it Important. Connie Marras.
Thursday, June 6, 3:30 - 5:00 p.m., Roundtable Table 4. LRRK2 as a Therapeutic Target. Brian Fiske.
Thursday, June 6, All Day, Poster P23.03. Targeted Digital Marketing Campaigns Successfully Recruit Diverse Cohorts of People with Parkinson's Disease and Healthy Controls to the Fox Insight Longitudinal Study. Roseanne Dobkin et al.
Thursday, June 6, All Day, Poster P23.16. Understanding Trial Specific Recruitment Challenges -- A Dynamic Approach to Identifying and Overcoming Obstacles: PD Patient's Perspective. Gary Rafaloff et al.
Thursday, June 6, All Day, Late-Breaking Poster LBP.84. The Economic Burden of Parkinson's Disease (PD) in the United States. Brian Fiske et al.
Thursday, June 6, All Day, Poster P39.01. Introducing the Clinical Trial Companion, a Research Engagement Tool. Sohini Chowdhury et al.
Friday, June 7, 8:00 - 9:00 a.m., Hot Topics Talk 2, P25.10. Assessing Tele-Hhealth Outcomes in Multiyear Extensions of Parkinson's Disease Trials (AT-HOME PD): Initiation of a Long-Term Observational Study. Ruth Schneider.
Friday, June 7, 1:30 - 3:00 p.m., Workshop FW2. What is the Best Biomarker in Parkinson's Disease. Co-Chair Brian Fiske.